Category Archives: Mental Illness

I Do Not Have Depression!

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I have melancholia!

I don’t have anxiety!

I have hysteria!!

Man, back in the early 20th Century they knew how to name things!!

In any case, I have passed through my recent depression and anxiety storm. Not easily, of course, as they never give up without a fight, do they?

I wound up being off work for five weeks. During that time I spoke to many GPs and saw a psychiatrist (I can never spell the word correctly the first time. It’s a total block in my spelling centres.) I had a very long, over an hour, consultation with the psychiatrist, which is miraculous. You’re usually lucky to get 20 minutes!

Anyway, she listened to my entire history and to all the things that have been happening in the last 2 – 3 years. Things like the estrangement from my mother, my step mother’s death, COVID (bloody hell COVID), getting COVID, being diagnosed with sarcoidosis, and my dad dying. Her exact words were “That’s a lot!” And she was right.

She was also really happy about the meds I was on. GPs had already told me that they couldn’t increase any of my meds, as if they did it could cause something called a serotonin syndrome. It’s a condition that is caused by too much serotonin in your system. Too much of that usually very useful chemical: –

“causes signs and symptoms that can range from mild (shivering and diarrhea) to severe (muscle rigidity, fever and seizures). Severe serotonin syndrome can cause death if not treated.”

(Mayo Clinic Online, https://www.mayoclinic.org/diseases-conditions/serotonin-syndrome/symptoms-causes/syc-20354758, retrieved 12th October 2023)

So not a good thing. Maybe I shouldn’t have it tattooed on my back with dopamine? 😀

A woman’s back with a tattoo of two serotonin and two dopamine molecules in a row.
The first molecule is serotonin, then there is dopamine and repeat.

Anyway, increasing my meds, any of my meds, was not an option. As I said, the psychiatrist was really happy with the meds and the doses I was on. Her conclusion? Nothing to do but get through it. 

Sounds like kind of crappy advice from a doctor who specialises in this sort of thing, yeah? Except it was actually what I needed to hear. I wasn’t instantly no longer depressed or anxious, but at least I knew I was doing everything I could to get through it. Or was I?

See, the other thing that lovely psychiatrist said was that I had never really worked through my sarcoidosis diagnosis. (‘Scuse the rhyme.) She could tell, and she was right, that I am the kind of person who doesn’t just say ‘oh okay, I have that’ but that I am the kind of person who says ‘Huh, what is that?” And starts investigating, and I hadn’t done that with the sarcoidosis. I have no idea why but she was right. I never had.

Now, currently, my sarcoidosis is very mild. Even when I flare it is nothing more than a slightly harder cough and exhaustion, which, of course, could be fibromyalgia (which is another word I can never spell). And day to day is nothing more than an almost constant throat clearing cough. Not even constant, actually. Occasional. So I dismissed it as no big deal.

Except it is a big deal. It’s a life changing,  possibly life limiting condition that I will have for the rest of my life. On top of my Fibromyalgia, Arthritis and Type 2 Diabetes. I used to have a trifecta. Now I have a quartet!

So I start looking more into sarcoidosis and started to feel mentally better. I started acting mentally better, which my husband noticed almost immediately. I started knitting more, spending time in my home office *finally* tidying it up, (it’s horrible, it really is, FEMA will fly over any day and declare it a disaster area) and went back to the GP for *something* to let me sleep. 

Because that was also a big issue. Bad sleep. As in can’t fall asleep before 12, awake at least once a night (getting older is hell) to pee, not falling back to sleep after that for at least an hour and then up at 7, at least during the school year.

All of the sleep aids I’d been given, which included Ambien among others, made it impossible for me to function the next day. I was offered melatonin but the one time I took it I woke up with a very bad headache. The GP gently suggested that might have been something else and that I should try it again. So I have been,

And it’s been working. At least to some extent. I definitely fall asleep faster. I usually wake up at least once a night for the toilet (see above, aging) but I do fall back to sleep almost instantly. I’ve even woken up a couple of times just before the alarm went off!

So I’m back to work this week and have actually been in my office three of the four days I worked. I worked from home one day, which is totally okay with my boss and my company. I got lots done in the office and I came home from work nearly every day not totally exhausted! Wednesday I had to even tell myself to stop because I felt like I was raring to go and knew that I would pay for that later. 

I also realised, as I started to feel better, that I’d been feeling rotten for more than a few months. Probably from before I caught COVID, which I consider the point of Everything Going To Hell. Why I, or even Simon, never realised it is beyond me.

So, here’s today’s Tee’s Tip of The Day:

If you can’t seem to do what you used to do? Figure out why that is. And don’t assume it’s just because of all of your current conditions. Could be a new one! Could be a worsening one! Try to find out, mmm’kay?

And learn how to spell psychiatrist and fibromyalgia without using autocorrect!

This Time It’s Been Over a Year!

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And it hasn’t been a good year. Well, a good 6 – 8 months, really.

Back in November, I got COVID. And then I got a cough that wouldn’t go away. Then I got a chest x-ray. Then I got a CT Scan. Then I got a referral to the Regional Respiratory Clinic. Then I got an Endoscopy. Then I got a diagnosis: sarcoidosis. Sarcoidosis is an autoimmune condition that usually affects the lungs and lymph nodes. For the record, when your GP says “There’s something in your lymph nodes that doesn’t look all that sinister” it’s still not very comforting!

For the most part, my sarcoidosis leaves me alone. But then Things Happen that make it flare. Recently that has included an emergency root canal, an emergency root canal part 2. Root canal part 3 didn’t make it flare. Who knows why?

In March of this year, my dad died. You might recall that he had dementia. I’m not sure I ever wrote about my stepmother dying, but she did, in August 2021. Totally unexpectedly. She was actually found dead on the sofa when no one opened the door and the police did a welfare check. She was Dad’s carer, so my sister and brother had to find him a place to live, which they did.

In any case, he’s been living in that place for just about 18 months, chugging along, not really changing. Eating his hot dogs and watching his game shows.

And then, on 10th March, my brother and I got a text from our sister; Dad is refusing to eat. She was going to go over to the living place the next day (a Saturday) to discuss hospice. Then we got another text. Dad needed oxygen overnight. I’m going over right now. Then, a few hours later, they don’t think he’ll last the night. And he didn’t.

And his death hit me hard. Harder than I thought it would. I thought I had done my grieving after the first time he had no idea who I was on Skype. I apparently hadn’t.

Going on from there I realised my mental health was deteriorating. For the first time in over 20 years, I was fighting depression and major anxiety. I asked to increase one of my meds and was told no. So now I’ve been referred to psychiatry and I’ve been off work for the past two weeks and will continue to be off for the next two. I have my psych appointment this Wednesday. Which is a miracle.

And that brings me to today. My Dad’s 86th Birthday. First one without him being somewhere in the world, even if I hadn’t seen him or spoken to him for years.

Happy Birthday, Dad.

Dad

17th September 1937 – 10th March 2023

PS That emoji up there, which is ‘disguise’ looks *exactly* like my dad.

Why I Really Missed PIP by One Point.

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As I mentioned previously, I applied for Personal Independant Payment in 2017 and took it all the way to appeal.

And I lost. By one point. I am one point not quite ill enough to receive the  money the government claims I’m entitled to. 

Except I’m not entitled to it. Not any more.

And everyone keeps telling met to reapply. That finding that one point, by starting from the beginning, shouldn’t be too hard.

But, for right now, the government has won. I don’t have the energy to start all over again.

And that’s what they are counting on, really. That they’ll wear down those of us who, according to them, are ‘fine’, so we’ll give up. Go back to work and not try again.

So I am, currently back at work, part time. 

And I’m exhausted and in pain. Like always.

But I’ve also been thinking about why I actually didn’t win my appeal. 

Because I don’t think it’s because I didn’t have enough evidence as to why I get anxious when I go some place new (the point I was trying very hard to get).

I think it’s actually because the appeal committee, who I met in person, saw the Robyn who covers her pain. And her exhaustion. 

Because that’s what a lot of us with invisible illnesses do. We cover. We put forth a facade of being normal. Of not hurting. Of being fine.

It’s not that we’re faking sick. We’re faking well.

And it can be hard to turn that off. To show how we really feel. 

How every step hurts. How our words get jumbled. How tired we actually are.

I am so used to letting no one, not even my family, see how bad I really feel, that it’s hard to drop the act and let it show. 

And why do I keep up the act? Because I have to. No matter how I feel, I have to get up and get Adam ready for school, and now me ready for work. I have to make lunches and help him with his uniform (Yes, even at his age. He’s still autistic, after all, and still has issues with fine motor control.) and wait for his bus with him.

Sure, Simon helps as much as he can. But he leaves the house over an hour before we do, to make it out to his campus for his first class. That might ease up a bit if Ulster ever actually moves to Belfast. (Perhaps a post for another day…)

So, as it always has, it falls on me. Except now, after Adam is on his bus, I’m on mine, off to work.

And I love my job. I really do. It’s the Administrative job I’ve always wanted in terms of autonomy, power, and the back up to use it. 

But it takes it’s toll. Even if I do not have a physical day at work, I still end the day exhausted. And some days have to be physical as there is a lot of cleaning up and organising my poorly neglected office needs.

So I spread that work out and make sure I have whole days of just sitting at my desk doing other things.

But even on those days I do 5,000 steps without even trying. Just from walking around the office.

It will become somewhat easier in a few months when we buy a car, because I won’t need to do any of the walking I do now to get to work. It’s not much, but what it is takes some of my energy. Not that driving isn’t tiring, but I don’t find it tiring in the same way.

But what I really want is to not have to wear the facade, ever. 

But I have to. 

Because my kind of illness? The invisible kind? Is still not believed by a whole lotta people. 

So if I grimace in pain, or don’t laugh off my word confusions or give in to the exhaustion as often as I truly want to, then people would think I was faking. Pretending to be ill.

When, really, I’m pretending to be well.

So…What’s The Craic?

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First of all, the sharp-eyed among you will realise that the URL of the site has changed. My former web host, aka my brother, decided to shut down his server and so we’ve migrated to a new host (NameCheap, if anyone cares) and given me a new URL. Which is actually my same URL that I’ve used for the company website since I started it seven years ago. Six years ago? Some amount of years ago.

But don’t worry about changing your bookmarks or that you’ll miss something because Leyser.org/TeeBlog will get you directly to designedtoatee.co.uk/TeeBlog. That’s the front page of the entire site now. It’s a nice picture of me, yeah?

Of course, if you don’t care about looking at my working or buying things from one of my shops (And why not? Huh?) you can add a new bookmark. To get directly here, to the blog, you need to use http://www.designedtoatee.co.uk/TeeBlog/Blog.

Or you can come through the front door. That’s okay. 😀

Let’s see, what else…

We’ve purchased and moved into our new house. OUR new house. As in, we own it. Weeeeelll, us and the bank, at least. But we can do whatever we want to it. And we are. And we will. And it is awesome in be here. I’ll be posting some before and after pictures at some point. Major changes coming, actually, starting with a complete bathroom refit.

My mental health is good. My diabetes seems to be under control. My fibro/early degenerative disease/arthritis kicks my ass and steals my spoons on a regular basis.

But I’m knitting. And crocheting. And doing tapestry. And sewing. And being a mum and a wife. And I have just bought a drop spindle and some wool and a book and I am going to learn how to spin.

I wonder if Simon will notice if I put a new shed up in the garden to hold a spinning wheel and a shuttle loom…

Or maybe convert the attic? Image source: http://www.jofirthlacemaking.co.uk/textiles_of_ireland.html

 

No Explanation No Defence

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The other day I posted this on my Facebook:

Now here’s Tee, with your weekly Lunch Making Report: Tee?
Thank you, Tee.
On Monday and Tuesday there were no issues. On Wednesday, sandwiches were put into the wrong lunch bags and Daddy mourned his lack of cheese but enjoyed the white bread while Adam had a tear or two for brown bread, but ate the filling and an orange provided by Mrs L.
On Thursday, Adam had pasta so he was safe but Daddy’s sandwich was without mayonnaise. Mummy realised this around 930a and text Daddy to warn him. His reply was frown emoticon.
And now today, Friday, all lunches are within parameters and the family gave Mummy a big cheer!

Quite a lot of people liked it or smiled at it.

And then came the judges. Saying they could make their own lunches. And how in their house it was every man for himself.

And I started to get defensive. There are reasons, good ones, as to whyI make Simon and Adam’s lunches every day. Also, I shared this to poke fun at myself and lament my badly functioning brain, affected by a combination of fibro and perimenopause.

The original maker seems be lost, but I got it here: http://questinggirl.blogspot.co.uk/2014/08/menopause-mothers-10-ways-to-feed-your.html

The original maker seems to be lost, but I got it here: http://questinggirl.blogspot.co.uk/2014/08/menopause-mothers-10-ways-to-feed-your.html

And I started to defend myself.

And stopped.

Because why should I? The reasons Simon and I have for the way we run our family are just that; our reasons. I don’t worry about what happens in your house, so why are you so concerned about mine?

Yes. I shared the above. As I said, as a way to blow off frustration and to write it what I thought was a funny way. Not because I was looking for advice or opinion. It was just one of the many ways my poor brain is these days.

So I’m going to still post things like this.

So feel free to judge me, offer advice or do whatever you need to do to get through the day.

But I’m going to stop explaining and/or defending myself, my choices and my family.

https://www.etsy.com/uk/shop/KnittedByATee

The Winter of My Disconnect…(Too good to pass up. Sorry. Not sorry.)

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About two months ago I suddenly realized I had no idea what I’d been doing all winter. I mean, my son was alive and happy, my husband likewise, and there were a few knitting bits around. But I remembered very little of it. I had been black in the Land Of The Black Dog and didn’t even realize it.

It had, indeed, been the winter of my disconnect. I can remember days, weeks even, of seeming to be looking out of my own eyes. Of being someone else inside me, watching me go through my life.

When I finally ‘confessed’ to Simon, he said he knew something was wrong. That I had spent whole weekends in bed, asleep. He didn’t say anything because he knows me and knows I would deny it, even bury it, until I was ready to say ‘It’s bad again.’

So I saw a GP at our practice and we switched me to a new medicine that worked for a bit. And then didn’t. And then I saw another GP and actually had an anxiety attack right in front of him and he switched me again. This time to Venlafaxine. Which has not only helped my anxiety, it’s helped my fibro.

To the point that I am nearly pain free. I am still tired a lot and my brain is constantly leaking out of my ears, but I can deal with that so long as I’m not in pain!

I mean, I still have pain. I’m not cured or anything. But I am so much better.

So…what have I been doing?

This:

https://www.etsy.com/uk/shop/KnittedByATee

https://www.etsy.com/uk/shop/KnittedByATee

Yup, I launched my shop. And immediately had two custom orders with a third happening soon.

I also sold one item from the shop directly.

I’ve also been doing this:

Yes. That’s a sewing machine. I’ve got the two Great British Sewing Bee books and I’ve started sewing from a pattern. My first shirt is nearly done and I am so chuffed with myself!

So I am feeling more connected to my life and my husband and my son and my craft. I’m imagining studio space through out my house as the dining room table is a bit inconvenient.

And, as the icing on the cake? In one week from tomorrow? I’ll be in Berkeley loving on my first two babies.

I may acknowledge their parents and my parents as well. 😀

So, Yesterday…

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Was my 46th birthday.

I’ve been struggling quite a lot with this birthday and I’m not really sure why.

I mean, I know part of it is that I’m now officially closer to 50 than 40 and 50 seems huge.

40 wasn’t huge because I was 20 weeks pregnant at the time with the baby that would become my wonderful little boy. So I was huge, but the birthday wasn’t. 😀

me and adam today and yesterday

Adam when he was the baby on the interior and yesterday when he was the boy waiting for the school bus.

 

I am, for the most part, happy and content with my life. I have a husband and son whom I love. I have more creative energy than I’ve had at any point in my history. And I enjoy what I do every day.

Yes, I’m sore. A lot. My arms ache and my legs ache and I’m tired a lot of the time. Such is life with Fibromayalgia, after all.

But I’ve been spending the time leading up to yesterday trying to figure out why it seems so huge and reflecting on my life.

And I recognize that I am not where I thought I’d be by this time in my life. I thought I’d be a published writer (well, I am, but only on the ‘net) and/or a professional theatre designer or at least fairly high up in the career that I started on at Kaiser about 20 years ago.

All of which was derailed, very firmly, by my first psychotic break at 25.

But I am, as I said, happy and content.

So why is 46 so hard?

It’s not the signs of ageing. I know I don’t look 46, for one thing. And I don’t really mind the signs that do show my age; my grey hair, my laugh and frown lines and the fact that I seem to be getting my mother’s hands, but without her lovely long thin fingers. 😀

So…why is 46 so hard?!

I have no idea…

 

Lessons From The Not Quite 5 Year Old…

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“What did you do today mummy?”

“Well, I walked you to school and then I went to the GP’s office for prescriptions and then to the chemist to get them filled and then to the supermarket for bread and pancakes and cereal bars. And then I came home and had a coffee and did some knitting and then had some lunch and then came to meet your bus. So, really, I did nothing today because I’m not feeling well. Again.”

“But you took me to school and then went to the chemist and the supermarket!”

“True, but I meant I didn’t do any housework today, like I had wanted to.”

“But you knitted! That’s housework!”

“Is it?”

“Yes.” With nearly 5 year old conviction. “You did lots today.”

Who Am I If I’m Not In Pain?

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So due to an incredible set of circumstances, I am remarkably pain free.

First I took up knitting to help my arthritic hands. And it worked. My hands are much looser and practically pain free. I still get twinges and opening jars is beyond me, but day to day activity is so much improved I am actually thinking about trying to draw by hand again.

Then the chemist couldn’t get me any Xanax. It’s not a drug that is prescribed in the UK, since the NHS doesn’t cover it (I’ve been paying private ‘script charges on it for years), so the European distributors haven’t been keeping it in the country. So I am in the process of switching to Zoloft. Guess what else Zoloft is good for, along with anxiety? Fibro pain.

So despite the fact that the med switch has given me some insomnia, I’m not really in fibro pain at the moment. I have nearly a full range of movement in my arms and the new pains that had started in my upper legs has totally gone. I’m still getting the fatigue and fibro brain, but I can deal with all of that, if there’s no pain.

Finally, I have been working with a podiatrist to pinpoint why my left leg hurts so badly, even with having had cortisone and exercise and losing weight and all those things. And for the first time someone looked at me and said ‘Your left leg is shorter than your right.’ Around 30 years my left leg has hurt in one way or another and this is the first time someone has noticed that. And that is skews the way I walk and the way I stand.

So I have a temporary thing for my left shoe that I am to try different thicknesses on, using, belive it or not, beer mats to raise or lower it as feels comfortable. And in four weeks I go back to report and have casts made of my feet and custom shoe inserts created. Just one day of having this temp thing in my left shoe and my leg feels better.

So how does it feel to not be in constant never ending pain?

Fucking terrifying.

I am trying so hard to not get my hopes up that this is how I will feel all the time now. I am trying to treat each day as a gift of painlessness.

And I’m not sure who to be any more. I’ve been Tee, the woman with three chronic pain conditions for a long time. I can’t even imagine what I might get done if I’m not spending days on the sofa just trying to get from one minute to the next.

But I am going to find out!

The Things I’ve Lost

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because of my chronic pain: –

  • Shopping all day long. Now shop ’till you drop means about an hour, two if I’m lucky.
  • Fountain pens. Can’t hold any sort of pen for long now. Writing on the computer just isn’t the same.
  • Beautiful notebooks. No point in having beautiful notebooks if you can’t write in them.
  •  FM heels. I haven’t worn a heel higher than about an inch in about a decade.
  • Dancing the night away. Only if I want to not move for two days afterwards.
  • Working full time. I do miss it, sometimes. Having an actual job in an actual office. Not that I don’t love working for myself, I do. But it would be nice to have more money. But that would mean more work. Which I can’t do.
  • Playing on the floor with my son. Lately my leg has been so bad (Ortho referral being waited on. Again.) that I can’t even sit in the bean bag chair for long. Makes it hard to help him lay out the 1,000 pieces of train track he got for Christmas.
  • A full nights sleep for more than one night in a row. I honestly don’t remember when I’ve felt rested for more than a few hours. I get one good night and then four or five bad in a row. And I can’t exactly nap in the afternoons. Except on the weekends.
  • The knowledge that doing something today won’t mean I can’t do anything tomorrow. Especially if I sleep badly.

What brought on this maudlin post? The fact that I’ve been awake since 0345, again, after several nights in a row when I appear to have slept all night but didn’t feel like I did, so I must have been at least partially waking up every night. Most likely brief bouts of awakeness, if not awareness, when I’ve rolled onto my bad leg.

And the fact that Simon is away to Dublin until very late tomorrow night. So no rest for me. Adam is at daycare for a half day today, I need to go get him in about 45 minutes and then, of course, tomorrow is Saturday. He has his class in the morning, so we’re out of the house by just before 10. I may get some ‘sitting around doing nothing’ rest if he sleeps tomorrow, but won’t get a sleep in the afternoon myself because the grocery order is due and I have some work to finish.

So I’m feeling a bit sorry for myself. Okay?